My Journey to Becoming Fully Me Albinism & All

Baby Antonia

I was born with albinism a rare genetic condition, which affects about one in 20,000 individuals in the United States. Albinism is the lack of pigment in hair, skin, and eyes. The type of albinism I have means I have no pigment or melanin in my body. However, there are other types where some melanin is present. Persons with albinism are visually impaired and often fall under the legally blind category. I am legally blind and have been since birth.

Growing up I was very aware that I was different, even so, I had a happy childhood. My family was incredibly accepting and they were fierce advocates on my behalf. I always had everything I needed in school and my parents pushed me to become my own advocate. Self-advocacy began from a very young age and for that, I am ever so grateful.

I grew up in Spain where most people have brunette or black hair, dark eyes, and olive skin. Standing out from the crowd, I was often teased by my peers because of my appearance. However, since I grew up in a small town, my appearance became normal and my classmates moved on to the next thing.

Belonging to O.N.C.E., Spain’s equivalent to the National Federation for the Blind (NFB), was a great resource for me and my family. I went to summer camp with other visually impaired kids where we participated in sports and other fun activities. They also provided orientation and mobility ( O&M ) training and any other school or in-home support I needed. Since there weren’t any organizations specifically dedicated to persons with albinism in Spain, this was the best option. Through O.N.C.E. I met a handful of kids with albinism and so I knew I wasn’t the only one.

Smoothing The Way By Assimilation

As I got older, I went to college abroad and lost touch with the blind and visually impaired community. It wasn’t a choice, it was just life.

So, during my adult formative years, I didn’t have role models who used any sort of accommodations. Not having anyone to compare notes with; I didn’t miss it, I was getting by. Even though I was legally blind, I was proud of being able to do everything everyone else did. The only accommodation I had were magnifiers to read. I never asked for special treatment in or out of class. Looking back at those years I marvel at how I got myself through graduate school! I accepted my albinism but didn’t accept that my disability might mean I have to do things a little differently.

When I started working I never disclosed my visual impairment. In addition, I worked really hard to minimize what it meant for me on a daily basis. I’m an incredibly organized person who gets anxiety over going to new places. As much as I could, I would map out routes days in advance. Then I’d even go on a test run the day before I had to be there, just to be sure I would find the location. Similarly, networking events were torture. Sure, it’s partly because I am an introvert, but I had a terrible time remembering people’s faces or recognizing them!

Accepting Albinism Through Social Media

A couple of years ago after joining a few albinism groups on Facebook, I became enlightened. A lot of the quirks I thought were part of my personality, I discovered were probably due to my low vision. I found a lot of visually impaired people get anxious when going to new places; many don’t like networking events. And for me, it is no wonder I can’t remember or recognize people—I cannot see them!

These online communities quickly became a place of solace, soul searching, and self-growth. I began to see very successful professionals use assistive technology. Also, I began to accept my visual impairment as a strength and no longer viewed it as a weakness. My albinism doesn’t define me, but it sure makes me who I am. It is because of my albinism that I have become an incredible problem-solver and out-of-the-box thinker. I tapped into the strength of the kid who was once such a fierce self-advocate. I knew I could become a better worker and person if I accepted doing things a little differently. Sometimes, I may need help but I realized that everybody has shortcomings and that we all need help at times.

Embracing Me Is Okay

When I began using a white cane it was my biggest moment of growth. It was both one of the best and one of the hardest decisions of my life. I was putting my disability on display for everyone to see, I was showing everyone what, for so many years, I considered my biggest weakness. I also questioned whether I truly needed it or not. With a lot of support along the way, I have found my cane to be so wonderful, in more ways than I expected.

When I received cane training, I spent quite a bit of time with other blind and visually impaired individuals. It was like a huge weight had been lifted off my shoulders! I began thinking about my journey and my struggle to come to terms with my blindness. Part of this process was understanding what it meant for me in my daily life. This is what triggered me to start blogging about being legally blind and still live a fulfilling life.

I want to show that my blindness is not my weakness, but an asset. While I can’t tell younger me what I know now, I hope my words will show other young people it is okay to be blind. It’s okay to talk about their disability and to seek help when they need it. They aren’t weak because of their visual impairment, they are strong in spite of it.

Connecting With Antonia On Social Media:

My Journey To Becoming Fully Me Featured Image Description:

Antonia with her crown of white/blond hair is posing outdoors with her white cane. She is broadly smiling as she poses confidently with her white cane that has a pink handle. Wearing a faux wrap light-colored top with jeans and adorable pointed flats Antonia is a beauty. Her jeans are accented with a pink bouquet of roses on the upper right hip.

Additional Images:

Baby Antonia is so adorable sitting on the floor playing with a toy. In this photo, she is dressed in a red top with green trim, white pants, green socks, and dark shoes.

Antonia is posing in her cap and gown holding a bouquet of pink roses. She has on sunnies and her white dress with black polka dots can be seen with dressy black flats.

‘Blind’ How Embracing This Word Led To Empowerment

I was born with cone-rod dystrophy, but growing up, I didn’t know I was “blind.” Professionals said I had too much vision to be blind, I was “low vision.” That meant I didn’t have to learn braille or use a cane.

My parents asked about braille lessons when I was about five, but professionals advised against it. They said I would try to look at the dots instead of feeling them. I remember thinking that sounded crazy since I couldn’t even see the dots on the page. But again, we were not the experts, so large print was the medium of choice.

I didn’t have a teacher of blind students or an IEP (Individualized Education Program); terms I didn’t learn until I was an adult. Ocassionally, I received orientation and mobility lessons (O&M) with a heavy marshmallow tip folding cane that came up to my armpit. But why would I need to use that in my tiny K-12 school a place I knew inside out? So the cane stayed folded up and out of sight.

The large print books were huge and heavy. Plus straining to read all day caused terrible headaches, so by high school, I almost completely stopped reading. Despite this, I graduated high school with OK grades and had a fairly normal adolescence.

#2 Cannon

Finding Change In Between Two Worlds

In college, I felt something needed to change if I wanted to live an independent, fulfilling life. The problem was I wasn’t sure how to accomplish this change. My Vocational Rehabilitation Counselor (VRC) helped me get a CCTV (closed circuit TV) to read with on my desktop. And even though I didn’t use it, I at least carried my folding cane.

Since I couldn’t see in the dark I missed out on a lot of social activities. My fear was compounded because I was scared to travel to unfamiliar places by myself. I remember one evening in particular where I unexpectedly needed to stay on campus later than usual. This resulted in me not getting on the bus until twilight. When I arrived at my large apartment complex, I had trouble seeing the contrast of the buildings against the waning light. With only a bit of light left in the sky I had to count the rooflines to find my building. There were several stressful incidences like that, and looking back, I’m surprised I didn’t get hurt.

But I wasn’t ‘blind,’ after all, I was ‘low vision.’ I felt like I was the only person in the world stuck somewhere between blind and sighted.

Thankfully, I eventually found out how to make a change. After graduating from college, I got a new VRC, Matt Lyles, who was blind himself. He said if I really wanted a challenge, I should check out the Louisiana Center for the Blind (LCB). He described it as boot camp for the blind, and he would know since he went there himself. Matt told me the most important thing he learned at LCB was that our limitations have more to do with our own personalities than blindness.

#3 Tower

Accepting A New Perspective About Blindness

Up until my conversation with Matt, that was the first time anyone talked to me about a residential blindness training program. I was ecstatic to start the nine-month training at LCB in 2010. The Center was different from the bit of blindness skills training I’d experienced before. Students with residual vision wear sleep shades during classes to focus on learning nonvisual skills like:

cane travel,

daily living,

braille,

technology,

and industrial arts.

Most instructors are blind themselves, and those who aren’t, often wear shades while teaching. Some of the most impactful moments for me were during trips:

white water rafting in Tennessee,

mountain climbing in Arkansas,

and in New Orleans at Mardi Gras.

LCB helped me develop a positive philosophy about blindness. Previously, I didn’t like to use the word ‘blind,’ I thought that was only for totally blind people or an insult. But I gradually learned I wasn’t fooling anyone by holding onto someone instead of using a cane. Or pretending to read along in print—I was blind, and that was ok. I found I was living life feeling like a ‘broken sighted person’ when I could choose to live as a ‘whole blind person.’

It was fascinating to me how many people experienced a similar lack of resources. After training, I earned my Master’s in O&M from Louisiana Tech University. I also hold a National Orientation and Mobility Certification (https://www.nbpcb.org/nomc)to share the structured-discovery (http://www.pdrib.com/pages/canetravel.php) style of training with more blind people. Matt showed me the impact one blind person can make on another, and I hope to do likewise through my service.

#4 Wedding

Paying Forward A Positive Philosophy

I’ve taught people of all ages cane travel and a positive philosophy about blindness through a variety of programs. Currently, I work for the National Federation of the Blind (NFB) of Texas as the NFB-NEWSLINE® Texas Coordinator. This position marries my undergraduate Journalism degree with my experience in the blindness field. NFB-NEWSLINE® is a free electronic newspaper and information service available to legally blind and print disabled subscribers. We also host training events for Texans of all ages across the state to teach people how to use NFB-NEWSLINE® and other blindness skills.

Outside of work, I am involved with the NFB of Texas CAREER Mentoring program for blind youth. My husband Trae and I live with two cats, and a weenie dog. I enjoy traveling, hanging out with friends, and shopping. Recently, I’ve gotten into paper crafting and became a Stampin’ Up! demonstrator. Art, like most anything, is something blind people can do with the right tools and techniques.

Not only would I have missed out on an amazing career and wonderful people without LCB, I would not have the tools and confidence I needed to be successful. I gained the skills to do small, everyday tasks like using a screen reader on a laptop and the confidence to understand that I am not inferior simply because of my blindness. I encourage everyone to find successful role models to serve as your mentors, and ask them what they did to develop the skills you appreciate in them. Blindness is not a tragedy, it’s just a characteristic.

‘Blind’ How Embracing This Word Led To Empowerment Featured Image Description:

Liz smiles and is wearing a black scoop neck tee and sunglasses. Her shoulder-length chocolate brown hair is blowing in the wind, as she sails with the Sailing Angels Foundation based in Houston. The sky and sail are visible in the background.

Cannon: Liz stands beside a Civil War cannon at the Tupelo National Battlefield wearing a salt-and-pepper wrap top over a black lace camisole, black skinny pants, and black flats. Her cane is decorated for Halloween with purple spiderweb Duct Tape.

Tower: Liz stands atop the 85-foot-tall Wilder Brigade Monument tower at the Chickamauga Chattanooga National Military Park. She wears a short-sleeved teal floral-print kimono cardigan over a white t-shirt, the sky, and treetops visible in the background. Her cane is decorated with sparkling silver material and a blue satin bow tied beneath the handle.

Wedding: Liz walks down the aisle at her friend’s outdoor wedding wearing a lavender V-neck ankle-length dress with lace accents, her brown hair styled in an up-doo with curls. Her long cane is decorated with the same lavender material as the dress.

Helen Keller: Liz recreates the iconic well pump pose at the Helen Keller Birthplace & Home in Tuscumbia, Alabama. She stands smiling at the camera with one hand under the pump’s spout and the other pulling the lever. Liz wears a black sweater dress trimmed with blue and white stripes around the hem, black tights, and a long matching black and blue necklace.

Digital Magazine Accessibility Experiment IRL

“Diversity Is Being Invited to the Party; Inclusion Is Being Asked to Dance”

~Vernã Myers

I published a quick blog post earlier today about a new project. The original idea involved creating a fully accessible digital magazine for blind and visually impaired people. As my partner, Chelsea Nguyen of CN Vision Image Consulting and I continued hashing out our plan it evolved. Since we agreed our publication should be wholly inclusive then so should our readers and contributors. So we expanded our idea to include people across the disability spectrum.

Chelsea, a talented image consultant, agreed to give our featured guests and cover models, an online consultation. We divvied up our tasks then got down to the serious business of pulling together a team of contributors. Within a couple of weeks, we had a name, domain, logo, social media platforms and more. The only thing missing? I’m glad you asked. Allow me to elaborate.

We found a cool magazine creation platform that was relatively easy to use if you don’t have a disability. I noticed missing alt text fields which are used to describe images to people who use screen readers. Not to be deterred, we asked a Techno Wizard if he knew of a company who would work with us.

During our initial email exchanges with the company, we thought they might work out. Sadly during our live demo, while the platform was WCAG 2.1 AA compliant it was a bust. WCAG 2.1 or Web Content Accessibility Guidelines is just fancy talk for sites that meet accessibility standards. Our problem was the service didn’t include the ability to create the magazine on the back end.

Where Do We Go From Here?

CAPTIVATING! is the name of our publication. Why? Because we believe people with disabilities are valuable, capable, and tenacious. The problem is society isn’t set up to accommodate many of us. Case in point, CAPTIVATING! Oh, and word on the street is a new content editor isn’t accessible (but you didn’t hear it from me). Thank heavens we developed a tagline that’s fundamental to our belief system: “The power and possibilities of inclusion are limitless!”

#1 CAPTIVATING! Logo

Currently, there doesn’t seem to be a wholly accessible platform for people with disabilities to collaborate and design a digital publication. In view of this Chelsea and our team had to get a little creative to pull this off. Our end product isn’t perfect and as we keep going we will get better. But imagine how much we could do if we had the proper tools? This is what it’s like living with a disability day in day out.

The world wasn’t designed for us and so many times we have to create workarounds just to do basic tasks that many take for granted. Is it fair? No it isn’t which is why we advocate for change, for inclusion. Disability rights are human rights.

We couldn’t create a fancy online magazine with audio, video, alt-text and yet pretty. It just doesn’t exist yet so we had to improvise. Here is a link to the first issue of CAPTIVATING! An accessible copy of the magazine will be distributed by our friends at the NFB (National Federation of the Blind).

CAPTIVATING! Front cover: on the top Quarter of the cover page Is the logo and name of the magazine, captivating, written in white bold All capital letters except for the ‘V’ in the magazine name is drawn with an artistic style font in bold red and looks like a big check mark. At the end of the word, ‘captivating’ is a red bold exclamation mark. Under CAPTIVATING! is the tagline “The power and possibilities of inclusion are limitless.”

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